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Not Another 1 in 20

Organized by: Eric Tivers

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Eric Tivers via Crowdrise
February 05, 2016

Thank you to everyone who donated! We raised enough money for Alex to get the Dexcom device for his Diabetes. Alex and his family thank you. See More

THE STORY:

Our goal has been met. Thank you to everyone who donated to this cause.

 

I created the ADHD reWired podcast and community as a way to share information through stories and to provide research and technology-based solutions to the challenges we face.

On Episode 62, I talked with community member and ADHD coach Carolyn D’Argenio about what it’s like for families affected by ADHD and Type 1 diabetes (T1D), a life-threatening autoimmune disease that requires constant monitoring. Carolyn started the Facebook group Shiny and Sweet to support families like hers. Carolyn’s son Alex was diagnosed with T1D when he was two years old. He turned 7 in March and doesn’t remember what it was like not to have his finger pricked for blood 10 times a day, not to have every activity monitored, and virtually every meal or snack followed by a dose of insulin. For the first four years of his T1D, this meant multiple daily injections. He now wears a pump, a computerized device that delivers insulin through a tiny tube inserted under his skin.

This was an especially sensitive conversation. Just days earlier, I received the news that one of my clients had tragically passed away due to diabetic hypoglycemia. He was 25 years old.

Like Alex and other Type 1 diabetics, his pancreas stopped making insulin, the hormone that turns food into fuel for the body. Like Alex, each day was filled with blood tests, carb counting, insulin dosing, and worry. Like Alex, he had a targeted blood glucose level to maintain. Like Alex, the risk of too many high blood glucose levels (hyperglycemia) included blindness, nerve damage, kidney failure, heart problems, changes in brain development, and more. Like Alex, the immediate risk for blood glucose levels that go too low (hypoglycemia) included seizure, loss of consciousness, and death; repeated hypoglycemia causes changes to the developing brains. These risks are very real. Sadly, my client was the one in the estimated “one of twenty” T1 diabetics who will die from hypoglycemia.

There is no cure for Type 1 diabetes, though there has been significant progress toward the day when Type 1 becomes Type None, as the popular JDRF slogan says. Changes in technology provide ways to help families manage the disease, like the insulin pump that can deliver the most precise doses of insulin and the continuous glucose monitoring (CGM) system that can provide an alert when numbers start trending toward hyper and hypoglycemia. These technologies can save lives!
Carolyn explained that Alex has had times when his blood glucose levels have dropped very low. He has had frequent nocturnal hypoglycemic readings, which were corrected ONLY BECAUSE one of his parents woke up to take blood from his finger while he slept. For five years, he has been checked at least twice a night. Alex is hypo-unaware. He cannot feel himself going low, so he doesn’t express it to others. He doesn’t display outward symptoms of out-of-range blood glucose levels. He is too young to test and treat himself.

The Dexcom G4 Platinum CGM with Share would provide Alex’s family the ability to notice trends in glucose levels and respond to them before they reach dangerous levels. This new technology would place a sensor under Alex’s skin that would read the glucose levels every five minutes. The sensor is connected to a transmitter that sends the data to a receiver that has built-in Bluetooth technology then take that data and send it to up to five iOS devices. The receiver is highly customizable. It will emit an audible alarm when blood glucose levels start trending out of range. Through the apps, an out-of-range reading would send text messages and audible alerts to all who are securely connected to Alex’s receiver. This means that if Alex is sleeping, and he begins to trend low or high, an alarm will sound to wake his parents up to respond to his needs. If Alex is on the school playground and begins to trend low, his parents will receive real-time notifications and can call the school. There can be someone in the school who can be alerted as well.

Can you imagine the weight this device would take off of his family’s shoulders? This device is life-changing. This device is life-saving. This device is FDA-approved for children as young as two. Despite these factors, the insurance company denied its approval for Alex. The family is appealing the decision.

The initial startup cost for the Dexcom G4 Platinum receiver, transmitter, and four sensors is $1,497. Each sensor may be worn for 7 days. Ongoing per-month costs would be $304. After the initial cost, it will cost $4,839 per year for this technology.

I am asking the ADHD reWired community and supporters to contribute to this fund to provide Alex with the Dexcom G4 Platinum CGM system and assistance with his family’s out-of-pocket costs for monthly maintenance. This is a small price to pay for saving a life. Technology like this would have made a difference to my client’s life, and it is in his honor that I ask for support. I ask this because together we are stronger than we are alone.

As mentioned, in the event that the insurance company reverses its decision and covers Alex’s CGM, the money raised will be used to provide a continuous glucose monitoring system for another person in need.
Thank you,
Eric Tivers, LCSW

Host of the ADHD reWired Podcast

DONATE

To This Fundraiser

$481

 

100% Raised of $481 Goal

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  • Eric Tivers

     

  • Ellen Boyne

     

  • Anonymous

    $20

  • Renee Mantelli

    $30

  • Terry Matlen

     

  • Meredith Riley Soddy

     

  • Tom & Yvonne Nardone

    $40

  • Gabe Cember

     

  • Angela Reslow

    $20

  • Anonymous

    $11.11

  • Marydee Sklar

    $40

  • Becca Toney

     

  • Doug Harris

    $20

  • Ryan Apelskog

    $20

  • Lisa Feinberg

    $50

  • Happy

    $25

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Organized by

Eric Tivers

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The Team: $481 TOTAL RAISED SO FAR

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Donor Comments

Happy

Happy

DONATION: $25

2 years ago

Lisa Feinberg

Lisa Feinberg

DONATION: $50

A tribute to my sister who is struggling to keep her Diabetes under control. I am unable to help her at this time. I pray she will take better care of herself very soon. In the meantime, I can help Alex. To Alex, may you be healthy and may your CGM arrive very soon!! May your Mom have a new sense of peace with this new awesome gadget being delivered and applied..asap!! 2 years ago

Ryan Apelskog

Ryan Apelskog

DONATION: $20

Good luck! 2 years ago

Doug Harris

Doug Harris

DONATION: $20

2 years ago

Becca Toney

Becca Toney

2 years ago

Marydee Sklar

Marydee Sklar

DONATION: $40

Little by little, goals are met! 2 years ago

Anonymous

ANONYMOUS

DONATION: $11.11

2 years ago

Angela Reslow

Angela Reslow

DONATION: $20

2 years ago

Gabe Cember

Gabe Cember

2 years ago

Tom & Yvonne Nardone

Tom & Yvonne Nardone

DONATION: $40

We love you Carolyn 2 years ago

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